Going through the stresses of cancer treatment is enough to make anyone sad, irritable, and frustrated. At times, you may notice that you don’t have control of your emotions, and you may cry about minor things. At the other extreme, you may find your mood is a little high and you feel euphoric, without any apparent reason. It is important to know that the cause may be the medications you’re taking. For example, both prednisone, which is often used to control extreme discomfort from nausea, may affect mood, causing unexplained highs that can be followed by intense lows. This emotional seesaw will pass, and you will return to feeling normal. If the mood swings are severe, ask for help in coping with them; you may even need to take medication to counter them. A persistent low mood could turn into a depression, with the symptoms of sadness, “bad” mood (feeling negative or hopeless), taking no pleasure in things you usually enjoy, and having trouble eating and sleeping. These are signs that you should seek counseling and perhaps receive medication to control these symptoms.
It’s important to recognize that these moods are signs of the brain’s biochemical reactions to drugs. They do not reflect failure on your part to cope with cancer, nor are they a sign of mental illness. You are fine-it’s what the medicines are doing to you.
Are you more easily frustrated and annoyed than usual? Is it harder to tolerate frustrations that you usually manage easily? This irritability may be part of your response to the physical and emotional stresses you are experiencing, but it also may be caused by the drugs you are taking. Often the simplest things can help you calm down and feel better, such as soothing music, physical exercise, a warm bath, or relaxation or meditation exercises.
While going through chemotherapy, some people complain of having trouble remembering things, reading books and newspapers, and concentrating on their usual work. Sandra was frightened that she simply could not do her work at her law firm. She blamed herself for not coping better. She became disconsolate and depressed and considered taking a leave of absence from her highly responsible job. She was taking a high dose of interferon as part of the treatment for melanoma. Most of the symptoms were controlled with an antidepressant medication. When the interferon dose was lowered, her previous level of concentration was restored, and her mood returned to normal.
We know that some chemotherapy agents, especially in high doses, may temporarily affect a patient’s to think clearly, causing memory and concentration problems. Keep in mind that these symptoms usually get better, and you should be back to normal by the time the treatment is over. However, sometimes these difficulties may persist beyond the completion of the treatment; we don’t know for how long. Some studies are that finding cognitive changes last as long as two years.
If you find it hard to concentrate during the treatment, try to postpone serious work that requires your full attention for a while. If this side effect persists after the treatment is finished, tell your doctor. Most important, do not blame yourself. In general, problems with concentration are subtle and don’t interfere with your normal activities. If you’re feeling very distracted or disoriented, check with your doctor about potentially dangerous activities, such as driving. Impaired concentration is usually one of those troublesome side effects that you have to put up with temporarily in exchange for the positive effect of the drug on your tumor.
Although the stress of illness and treatment alone can be sufficient to throw off your sleep-wake cycle, drugs like prednisone also contribute to sleep problems, so trouble sleeping may be a complication of treatment. Try your usual “tricks” to get to sleep, but if you are arising tired and unfit to start your day, ask your doctor for some sleep medication to reset your cycle back to normal.
While fatigue is a physical symptom, it feels as though it controls your psychological state as well. During chemotherapy, it can come from low red blood cell counts, causing anemia, or it may be an effect of the treatment on your physical state. Fatigue makes it difficult to get motivated, rouse positive emotions, or undertake physical activities. Some of the high-dose chemotherapy regimens produce profound fatigue, so that for a time, all you can do is simply sit or lie in bed. It may be time to “go with the flow” and get as much rest as you need. Try to remember that the fatigue is a side effect and will go away when the treatment is over. However, it can persist for weeks to months.
Psychological side effects of radiation
Radiation has been used as a treatment for cancer since the early 1900s, soon after its discovery. However, for many years the dose was difficult to control. Only much later on did it become possible to carefully control the dose, so that we could obtain its curative power without intolerable, damaging side effects. For example, cancer of the cervix, larynx, and several other sites can now sometimes be cured by radiation alone. However, most older people remember that when radiation was recommended in earlier days, it meant that the cancer was not curable and it was palliative treatment (meaning its aim was to delay the growth of the tumor rather than destroy it completely). Almost everybody knows about the radiation damage to people at Hiroshima and Chernobyl, so that the destructive side of radiation is fresh in our memories. Being told that you need radiation treatment for your cancer may arouse these fears: that your cancer cannot be cured or that you might be left with very bad radiation sickness. These are fears based on myths that simply don’t apply today; your doctor can explain reality to you.
Phobias and enclosed spaces
Deborah, a forty-year-old broker who had cancer of the tongue, had a fear of being in enclosed spaces. This was a long-existing phobia that didn’t usually bother her because she avoided situations that provoked the fear. The radiation treatment required that she be fitted into a mold that was made for her head and shoulders to ensure that she was positioned exactly the same during each treatment. The beam came from a large source lowered from above her. Each time, she required an anti-anxiety drug before the treatment to control her terror of the machine and the restriction on her motion. A series of frightening thoughts would go through her mind each time she was in the room: The machine might fall on her; the dose might be too high; she might move and the treatment will go to the wrong part of her body. Reassurance, medication, and counseling all helped her to control an old phobia that had caused her little trouble until this new situation required her to face it.
A prominent, almost universal symptom caused by radiation therapy is fatigue, similar to that caused by chemotherapy, although the exact cause of radiation fatigue is not known. The feeling is of lack of energy, inability to carry out your usual tasks, having less interest in your usual activities including sex, and not feeling rested or able to “shake it.” Although these symptoms are physical and may come from the radiation, they can also be symptoms of depression, to which you are vulnerable during radiation therapy. Tell your doctor your fatigue is severe and that the cause of it should be sorted out.
The fatigue can linger for weeks or months after the radiation is completed, so don’t be surprised if your energy doesn’t rebound quickly at the end of the treatments. High expectations of an immediate return of energy will only make the period more difficult.
Coming after the crises of diagnosis and possibly surgery, the daily routine of going for radiation treatment and seeing others who are ill makes you feel the reality more keenly. Don’t be surprised if you begin to feel sad as you respond to all that has happened to you. Do ask for help if you need it.
Effects of radiation to specific sites
Radiation over the mouth, neck, or chest is apt to affect your swallowing and eating. Loss of appetite and nausea are common, as is a change in the taste of foods, especially if the radiation is over the mouth or throat. Radiation to the chest can affect the esophagus, with discomfort and pain on eating.
Radiation to the brain causes hair loss, which is often permanent. It may be necessary to get a wig (which is better purchased before the hair loss occurs). You may have a period of poorer concentration while you are receiving radiation to the brain, but your concentration will improve after the treatment ends. In some cases, mild memory problems may persist, such as trouble remembering names. Should this occur, find out if your local hospital or cancer center has a memory-retraining program, which can help you compensate for and cope with this problem. Radiation appears to have remarkably little impact on mood and emotions. However, the steroid drug dexamethasone (Decadron) is often given at the same time, and it can cause mood changes and irritability.
The best way to prove that a new cancer treatment works and is superior to others is by studying it in clinical trials. Trials are carried out by developing a research protocol in which the therapy is given at a specific dose on a defined schedule to people who have the same stage and type of cancer. Repeated observations are required and specified. The effects on tumor growth can then be determined. It is important that you know something about the why, what, and how of clinical trials, since there are many misunderstandings about them.
First, all clinical trials are under federal regulation, which mandates who is qualified to conduct the studies and requires that each hospital have its own institutional review board (IRB), responsible to the federal oversight agency, to review and monitor every research study being conducted by its staff. The IRB examines the expected benefits of each trial and evaluates the evidence that potential benefits outweigh the risks to the patients. Patients who agree to participate in clinical trials must be informed about all of the risks and benefits, be told about other treatment options available to them, and be told that their care will not be jeopardized if they choose not to participate in the trial.
The federal guidelines for conduct of research on human subjects are derived from the post-World War II Nuremberg trials, which revealed evidence of terrible abuse of people who were made the subjects of unethical experiments by Nazi physicians. The resulting outcry after the trials led to the extensive rules we have today to protect any person who is treated in a clinical trial.
Clinical trials are divided into Phases I, II, and III, each with a different goal. These phases guide how a new drug or method of treatment is identified, tested, and finally approved for general use.
Phase I trials are designed to test a new drug or combination of drugs in humans for the first time and to determine a tolerable dose of the drug for patients in terms of toxicity. Phase I is the most experimental phase, and these trials are open only to patients whose tumors have not responded to standards treatments available. The number of patients studied in a Phase I trial is relatively small, rarely more than twenty. Patients in Phase I trials understand that the drug has been tried only animals and that a standard dose has not been established in humans. Indeed, their informed consent document states this fact and also that the purpose of the clinical trial is to determine such a dose. Both patient and doctor hope the drug will be active, however, and that the patient will be in the first group to benefit.
Phase II trials constitute the second level of testing of a new drug or combination of drugs that have undergone testing in a Phase I trial, during which the safe dose was determined. Phase II trials are also small, usually composed of about fifteen to forty-five patients. These patients are studied carefully to determine whether a particular tumor type responds to the drug at the dose and schedule established in the Phase I study. Patients are studied before and after receiving the treatment to assess the size of the tumor and clinical benefit. A complete response (CR) means all signs of the tumor have disappeared, and a partial response (PR) means that the sum of all the diameters of all the tumors has decreased by half. Phase II trials often test a new drug or combination of drugs in several different types of tumors. For example, gemcitabine (Gemzar) was first shown to be effective in pancreatic cancer. It was tested in other Phase II trials and found valuable in the treatment of other tumors as well.
Patients who choose to participate in Phase II trials understand that standard, available treatments may not be effective against their tumors and that, while there is no assurance of benefit as a result of the new treatment, there is hope that the drug will be effective for them.
Phase III trials study drugs that have proved to be effective treatments in Phase II trials and that appear to be as good as or better than standard treatments for a particular tumor. A Phase III trial is termed a randomized controlled trial. Patients are assigned to either the standard treatment or the new one by a chance mechanism, hence the term randomized.
Patients participate knowing that they will receive either the best standard treatment or the experimental one, which may be better. They cannot choose, however. No placebo or sugar pill treatments are used; the best standard treatment is compared with the new one. Several hundred patients are recruited for Phase III studies, which are often conducted by large cooperative clinical trials groups directed by the National Cancer Institute. Patients are matched as nearly as possible for any other factor that might affect response or survival, like level of physical performance, age, menopausal status, or prior treatment. The size of the study groups for Treatment A and Treatment B is determined by statisticians on the basis of the size of any expected difference. If the investigators think a new treatment would be of interest only if it could double the response rate, or double the survival rate, they will take fewer patients than if they are willing to settle for a treatment that will improve these parameters by only 25 percent. The outcome of this large study is then presented to the Food and Drug Administration. If the new treatment turns out to be more effective than the standard one, the results are announced to doctors, who then can use it as first-line therapy.
To be sure that the two groups are nearly identical and that there is no bias in choosing which patients go into either group, participants must agree to be assigned randomly to receive either the experimental treatment or the standard treatment. Which group you go into is determined by a centralized computer that your doctor doesn’t control. The reason for this randomization is the notion that doctors or patients might be biased if they were allowed to select the treatment the patient will get. It is critical that the determination of groups be unbiased. This is sometimes a sticking point for patients, and may be for doctors, but is the only way to determine when a new treatment is truly better. It is crucial to remember that you will receive either the current best treatment for a tumor or one that may be even better. No investigator plans to study a treatment regimen that he or she thinks is less effective than the standard.
As difficult as these trials seem, they are essential for improving the treatment of cancer, which still falls far short of where everyone wants it to be. When you take part in a clinical trial, you are carefully monitored, your treatment options are fully explained, you get either the best treatment known or possibly a better one, and you contribute to improving treatment of future cancer patients.
Some people are afraid of clinical trials because they think they will be treated less well: “I’ll just be a guinea pig.” This is far from true since much preparation and review goes into the protocol plan, watching for side effects, and observing tumor response. In a study of children treated in clinical trials compared with those who were not, survival was better among the children treated in trials.
In many trials today, investigators also monitor the functioning of patients in the different areas of their lives, that is, the physical, psychological, social, work, and sexual domains. These data constitute what is called “health-related quality of life”, which yields scores that are then used to measure not only length of survival, but also the quality of that survival.
Others who are ill become upset when a particular clinical trial isn’t available to them because their medical status doesn’t exactly fit the criteria set out in the protocol. Some people are bitterly disappointed at not being able to take a new experimental treatment, especially people for whom standard treatment has failed and who are seeking treatment on Phase I and II protocols. It is hard to balance the demands of doing good science that gives solid answers versus the human needs of people who are seriously ill. At times, in exceptional situations, an IRB will give permission for a “compassionate exception,” so that a doctor can treat someone who does not meet the criteria for participation in the trial.
There are added psychological strains on both the physician who is at the same time a clinical investigator and a personal physician, and the patients, who are very aware of how much is riding on the outcome of the experimental treatment for themselves and others. The doctor and patient become partners not only in treatment, but in research. It is amazing the altruism of the many people who say, “Maybe it won’t help me, but I’m glad to be helping to find a better treatment for patients with cancer who will come after me.”
Without clinical trials, better treatments for cancer cannot be found. The human side of clinical research is as important as the human side of clinical care. Clinical trials require a high level of trust between the doctor and the patient and knowledge that improvement is possible, providing the basis for hope.
In summary, the main treatments for cancer-surgery, radiation, chemotherapy, and immunotherapy-have some common physical side effects and some common psychological side effects. Anxiety or depressed feelings sometimes arise from dealing with illness, but also arise from the treatments themselves. Thanks to psychological support through family, friends, clergy, and group and individual therapy, there are ways to help you tolerate the treatments. Medications to control sleeplessness, anxiety, mood swings, and poor concentration are available. Such drugs are not addictive when taken under supervision and can bring great relief from troublesome symptoms. Self-managed methods of relaxation and meditation are also effective. Use what suits you and your personality best. The important thing is: Don’t suffer in silence. There is help available if you ask for it. If participation in a clinical trial is offered to you as a possible treatment option, be sure to obtain full information by reading the materials given to you and talking with the physician. Becoming a partner in a clinical investigation is a helpful way of coping for many people.
You can get a listing and description of all available clinical trials for different tumors by: